Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

2 Negative Tests...no Relief. What Next? 4 Year Old.


avery's mom

Recommended Posts

avery's mom Newbie

Hi, I'm new to this site and have read and read and read many posts. My DD was born prematurely and had a few issues when born. She was only preemie formula for a few months and then found had horrible diareha and switched to soy formula which worked great. We kept her on soy milk when she turned 1 for a few months until she was tested by an allergist who insisted she was not allergic to milk and her pedi said it was ok to put her back on milk. We did that. But, when she was 18 months old and got a bad UTI and as a standard, i guess, was tested for kidney reflux , which she did have. But, on the xrays they also saw severe constipation. We never knew - she had BM's everday and never seemed in pain. Starting then we saw a gastro. We put her on Kondremul for quite a few months and had follow-up x-rays to show she wasn't constipated - we would slowly back off the kondremul and go on our marry way until it started back up again in a month or sow. She did did very well potting training at 2 1/2 , but by 3 1/2 she started having 5-6 accidents a day. seeing a uroligst and gastro - saying that she was having bladder spasms caused by the constipation. so...we've been on a med to help with bladder spasms, miralax for a few months....the meds have helped, she now only has 1 or no accidents in a day. but....my question is: could this be celiacs? the doc's don't seemed concerned about WHAT is causing the bladder spasms or the constipation - all they seem to care about is that it's better now. I don't want her on the med forever and i want to find out what's causing and fix THAT. she was tested for celiacs at age 2 and again at age 4 - both negative. Any thoughts about what to do next? I would appreciate any insight.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



carsondcat Newbie

I feel for your frustration with the medical profession but my biggest insight for you is don't give up trying to find out what the cause of her symptoms are, medications can mask symptoms and that's what they are treating the symptoms and not the cause.... i do know that it can take up to 12 months for the colon to recover from constipation. i also know that you can get negative results for celiacs. So be a pro active mother and make a pest of your self until they find the cause of her illness and good luck i hope you find the answer soon.

ang1e0251 Contributor

A child that young will often test negative for celiac disease even if they have it. That's no comfort. What would you think about working with your dr to put her on an elimination diet to see if this problem can be related to a food sensitivity? If you come from a different angle to your dr, he might be more interested in your search for answers. Especially an answer that doesn't require much work on his part.

happygirl Collaborator

Try the gluten free diet to see if it helps your little one's symptoms - you don't need a doctor's permission to try the diet.

While you are trying the diet, it may be worth it to get your child's records and find another doctor for a second (or third, fourth, etc) opinion.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    2. - tiffanygosci posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Aldi Pueblo Lindo Yellow Corn Tortillas

    3. - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    4. - trents replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    5. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748

    Susan Upchurch
    Newest Member
    Susan Upchurch
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.